'I've learned to accept my brother's autism and want to help'

Wednesday 27 April 2011 08:50 BST

Coping with an autistic child is challenging for any family. For Bella Tommey, growing up with her brother Billy meant missing out on "all those things other people take for granted" after he was diagnosed with the disorder at the age of two.

"We couldn't go to Sainsbury's without him having a fit and I couldn't even go shopping with my mum because she'd have to look after Billy," explains the 16-year-old. "We couldn't just hang out as a family."

Having a sibling with special needs has not left Bella feeling resentful or cheated though.

Instead, it has been the inspiration for Give Autism a Chance, her campaign to find jobs for people like her 14-year-old brother. Its supporters include 1,500 Facebook fans and even David Cameron, who invited Bella to No 10.

Only six per cent of adults with autism are in employment. But the Treasury, Bella points out, could save more than £500 million if 20 per cent of them paid taxes instead of receiving benefits.

"I chose to set up the campaign because of Billy. I realised something needed to be done," says Bella, who lives in Hampton, near Richmond, with her parents.

"I didn't want Billy to have to sit at home not getting a chance to do anything. I've met lots of children with autism so know how capable they can be."

Her idea was to launch a pop-up café whose staff all suffer from autism. It was backed by Channel 4's Battlefront, which mentors young people like Bella who want to change society. Finding a venue for Billy's Café "took a lot of work" but it finally opened in January this year at Clerkenwell Kitchens, with support from chef Gizzi Erskine and Radio 1 DJ Scott Mills. Billy was one of the staff serving customers.

The project has proved so successful - one of the staff has already been lined up for a job - that Bella is in talks about permanent franchises in the US.

Activism is in Bella's genes. Her mother is former actress Polly Tommey, who during the last general election posed Wonderbra-style for a billboard poster campaign across London to raise awareness about autism. The cafés are very much Bella's personal mission, though: "I needed to do it without my parents. I wanted to do it for me."

Bella shows me a video of her interviewing a girl with Asperger's syndrome and her empathy with the other teenager is humbling. Mature beyond her years, she is passionate about her cause.

It was shortly after Billy's first birthday that Polly and Bella's father Jonathan, a qualified nutritionist who now runs a clinic for children with autism, first realised something was wrong.

Gradually he changed, says Bella, from a "smiley" baby to a disturbed little boy who would bang his head against the wall, scream incessantly and line up his toy cars obsessively. "I remember when he was diagnosed," she says. "It was like he had lost everything he'd learned and we had to teach him everything all over again."

Explaining to friends why her brother would run around naked was "embarrassing" for Bella, who desperately wanted to be the same as everyone else. Her parents inevitably had to focus on Billy, so Bella and Toby (her youngest brother) sometimes "felt pushed out". The family even had a speech therapist living with them at one point.

There were no family meals out or holidays abroad because Billy is acutely sensitive to noise and so hates flying or crowds. "We would go to Tresco on the Scilly Isles for holidays, which was lovely but eventually got a bit boring. And my parents could never go out on their own together."

Sweets and other treats were banned because Billy had to eat a special diet. The family also moved house five times in 10 years to free up money for Billy's treatment - Bella's parents spent £16,000 on tests in the first year after he was diagnosed. He was the first child in the UK to trial injections of a synthetic hormone called secretin. Though scientists now discount the possibility of its beneficial effect on autism, the Tommeys insist Billy's digestive problems cleared up as a result. His health problems also responded to nutritional supplements created for him by his father.

In the early days, Billy went to a mainstream school where he was so miserable he used "to cry 24/7". There was the inevitable name-calling, which upset Bella deeply. Today he attends a special boarding school in Hassocks, West Sussex, where he has improved hugely. "In the past five years things have changed," says Bella. "He's so much better and we can even have a proper conversation."

A major concern for Bella and her parents is what will happen to Billy when he is older. The Tommeys are trying to set up a special farm with a shop and housing where people with autism can live.

Otherwise, says Bella, there is nowhere for people like him. His school does teach life skills and his sister is optimistic that one day he may even form a romantic relationship. Yet she is also realistic about the stigma he faces.

"Many people with autism are discriminated against," says Bella. "If someone with autism was walking along the street you wouldn't know. You'd think they were just a normal person acting strangely."

To help people with autistic brothers and sisters, Bella has set up the first global support group on Facebook. There are 6,000 members, including people in the US and Australia. The day we meet, she is getting ready to welcome 20 people from the group into her home to share their experiences.

People with autism often possess a special talent and Bella proudly tells me how Billy is "number one in the world" at the racing game Mario Kart Wii. "He's amazing at it and knows he's good. He's also really good with computers."

At this point, Billy enters the room. Bella tells him to shake my hand, which he does. He tells me he liked working at Billy's Café, then decides he doesn't want to answer any more questions unless they are about go-karting or tenpin bowling. His sister does manage to extract a "thank you Bella for doing the café" before he leaves. She laughs good-naturedly at his stubbornness.

"My love for Billy is different from any other. We do argue but he's part of my life. I've learned to accept his autism and want to do everything I can to help. My campaign proves that people with autism are capable of working. Everyone has a voice and should be given a chance."battlefront.co.uk